Unbearable Agony: A Personal Fight With the Puzzling Pain of Cluster Headaches

It was a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation sprang behind my one eye. It was followed by rapid jolts, reminiscent of lightning bolts. As each class came and went, the pain eased and then returned with increased force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in class by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with severe discomfort around one eye that lasts for three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often affected. Attacks typically begin with abrupt, excruciating pain focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; others have continuous attacks, defined by the absence of long pain-free periods.

What unites patients is the severity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the inability to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical healing texts suggest unusual treatments for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only officially recognised by global medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Prominent specialists in diagnosing the disorder note this.

In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes the dental profession still need greater education. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen treatment and medication until the attack passed.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Brief cycles with infrequent attacks are managed with acute treatment only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The national guidance need updating to reflect a